No support or resources for my two Autistic boys

For issues specific to autism / Asperger Syndrome.
Hi,

My name is Julie and I'm currently caring for my two Autistic boys. Our situation is awful, since despite my efforts, I'm finding it difficult to access help and resources which is largely due to the boys only being in receipt of middle-rate DLA. I find this absolutely appalling and cannot believe things have reached such a point that we can no longer provide resources for those in need of them most within our own society.

My eldest boy, 19 yrs, is worst affected by Autism since his personal and social interaction skills are significantly more impaired than his younger brother and are unlikely to improve any time soon. I am struggling to find any support for him in order to prepare him for the work-place or life in general. I feel so guilty complaining, but am completely alone and spend most of my time frightened since he is so vulnerable and lacks the social skills to keep himself safe, which is every parent's worse nightmare. At college most of his class-mates want to thump him owing to his inappropriate comments or behaviour and has also been known to go missing on occasions with no-one knowing his whereabouts. He sometimes forgets the time too and misses the bus home, which given the rural location we live in and that I'm a non-driver, is truly terrifying. There are other things I could prattle on about, but suspect most folk on here are familiar with these so will refrain from going on too much.

But for me, the lack of support and intervention has left my family cut off without a hope and am feeling pretty isolated. Is anyone else having the same trouble?

Julie. X
Hi Julie, I have a son with severe learning difficulties, now 35. What help are you getting from Social Services? Have they done a Needs Assessment for your son? Have you had a Carers Assessment? If he isn't very good with time keeping, then the college should ensure that he gets the bus, especially as you are in a rural area (like me) and don't drive. In theory your son is in the middle of Transition, in theory that means he comes under both Children and Adult Services, there have been case conferences, future planning etc. Have you been involved in anything like this?!
julie,
I'm sorry you're having so much trouble.
I too have two sons with autism.Neither of them would ever be capable of going on a bus alone,let alone working.
Stoke council has flung slightly under £2,000,000 pounds at them in the two years and set them up in a council bungalow neither I nor the boys want.This is because the council has decided to 'play hardball' with me since I put the phone down on a council officer in 2005.
Whatever you do to try to get help,try to make sure that it's done in the public eye.It's unlikely that you'd get a Deprivation of Liberty Order posted,but if you did,it would make it impossible for you to contact the local press/radio,etc.
It's possible that local autistic support groups could help; that's not my experience,but it's worth a try.
Hi and many thanks for your replies!

I've requested assessments for both myself and the boys in the past (2 years ago), but was rejected on the grounds of the boys not receiving higher-rate DLA, which I've since learned is completely wrong! Thanks to Carers UK, I've now contacted the relevant teams and re-applied for our assessments....
That's good news. Have you ever seen the Disability Alliance handbook? It deals very clearly with people like your sons (and mine) who may be entitled to the highest rate DLA Care and Mobility because of the amount of supervision they need? I know that DLA has since become PIP, but when I look at the PIP criteria for mobility, it appeared that my son would be much more clearly eligible for that, than the old DLA. At 16 years old, the benefits for disabled children change, as they officially become adults early. M had already been awarded the highest rate of both DLA components. Post 16 it was a battle, lots of letters to and fro, but finally it was awarded for life. Has anyone told you that post 16 yours sons should both be entitled to what used to be Income Support? If you have "severe mental impairment" you are completely exempt from Council Tax. All these things can make a huge difference to the family income in total.
That is interesting and definitely worth perusing! I think once I've sorted out Community Care Support that will be my next step!

I've still got a little time since I'm still in receipt of Child Tax Credits for them both, but as is the case with most Carers, I admit to becoming increasingly worried about money and work. I'm still having trouble adjusting to the idea that most of us are being forced into poverty through poor governmental policy on both counts...am terrified about the future...mostly because there isn't one :(

It's so good to talk to folk who are in the same situation and have been cut off for too long methinks :D
Hi Jackie,

Did your son at college have a statement whilst at school? Does he have an LSP (learner support plan?) This should state the support he needs from college etc and is a useful tool for backing you in getting this support. If he doesn't then I request he is assessed for an EHC plan, but do your homework first to ensure you have evidence to prove his level of need.

Melly1
Yes, both boys are statemented and have been since early childhood, but I agree, this is very useful since it demonstrates their needs.
The LSP should state such things as assistance to make the bus on time etc

Melly1
At the outset every new parents should learn about it and be vigilant to diagnose if their child is born with autism, it is quite easy to decipher with the child’s behavior within the first two years. A certain behavioral pattern that hints at a child’s possibility of being autistic can be diagnosed. Services that take care and deal with autism should be consulted with and the possible solutions should be worked out at the earliest from letting the disorder woe and ruin the child’s life. It is important that services are provided to the patient according to the variable spectrum conditions.


Post edited to remove advertising link, as advertising is not permitted under forum rules.
Melly1 (mod team.)